My mom was officially diagnosed with ALS July 2014. Her symptoms probably started in Fall of 2013, but we didn't think too much about it until the following summer. First I want to give a warning as I will be describing the last few moments of my mom's life... if this makes you uncomfortable I wouldn't read this blog post.
ALS took a lot from my mom. Her ability to talk and smile at the end, but it gave us so much too. My sister and I became closer than we had ever been. We both shared in caring for our mom. She was good at some things and I was good at other things. We really were an amazing team when it came time to take care of our mom. My mom's ALS took away her speech first. She was still able to walk and be some what independent up until her last days. I feel very fortunate for this as she was not confined to a wheelchair or breathing machine like most ALS patients.
I want to go back a few weeks.... My mom developed a tooth ache. My mom did not have a lot of money or dental insurance. This made it more difficult to find a dentist that would help. I found that HCMC has a dental clinic and we headed there for a consultation. The conclusion was to have her tooth removed. Of course this made me nervous because my mom's health was not very good. Her breathing was getting more labored and she was not able to swallow any longer. I was nervous that the additional saliva and blood during a tooth extraction would be an issue. Either way I knew we had to take care of this or it could turn into an infection, etc. So we scheduled the appointment for Thursday, August 20th! I picked my mom up that morning and headed downtown. I was nervous that this would be painful and have issues during the aftercare. HCMC's oral surgery is a first come first serve type of place. The earlier you got there the better of chances you could have the procedure done that day. We were told that we could be there all day. We arrived and checked in. After waiting about 30 minutes my mom started choking on her saliva. I hadn't brought all her machines with and I panicked. A nice dental hygienist saw that we were struggling and brought us back to the exam rooms. The nice women helped suction out my mom's mouth and we discussed my concerns. Please note that the dental hygienist never looked at our chart or even knew how bad my mom's tooth was when she was helping us. She quietly said to me... if this was my parent... I wouldn't go through with this procedure. It wasn't worth it. I took this as a sign and told my mom... We are out of here. I knew God sent this messenger for a reason because my mom died a week later. I learned that things happen for a reason and we have to keep our eyes, ears, and heart open for messages from God.
When we got back to the Assisted Living we had an appointment with a Hospice team. Our assisted living team at encouraged us to put my mom on Hospice as they wanted more resources to keep my mom at her HOME. We met with the amazing Hospice team. Most people think Hospice is only for the last few days/weeks of life... but Hospice can be utilized for extended length of time for terminal people. We all thought my mom would be on Hospice for months (including the Hospice team).
On Friday August 28th the assisted living called my sister to said that my mom had requested more Morphine. The previous weekend when we admitted my mom to an Hospice team they gave her some morphine to help with her breathing. She was on a small dosage and it seemed to help my mom relax and help with her breathing. That week life continued to move forward. (Side note: My mom had a machine called a bi-pap... similar to a C-pap, but it both pushes and pulls air. She had been trying for months to use this machine, but she really struggled. She would maybe tolerate it for 15-20 minutes before she became too claustrophobic. Since she did not want a trach intervention this was her only option to allow her body to rest. Your muscles (diaphragm) that is used to breath becomes weaker and weaker as the disease progresses and since you have to always be breathing her body just was becoming too week.) Back on topic... So that Friday morning my mom started to request additional amounts of Morphine. They recommended that we should come and spend some time as things seemed to be changing rapidly. We all headed over Friday afternoon. My mom had gone to Bingo (her favorite) activity a few hours prior and was sitting in her chair playing on her iPad. We all visited before heading to dinner. After dinner we stopped back to say good night and that we would be back the next day. I gave my mom a hug and we did our "I Love You" with sign language... since my mom was not able to speak any longer we would do I love You with our fingers and hold them together. That was the last time we communicated.
Saturday morning the assisted living called my sister to say that my mom was unresponsive and that they called the Hospice team. They had gone into her room around 3 am to give her another dose of morphine and she shooed them away. (typical mom). Our good friend Michelle arrived first and called to just give us a heads up that the hospice nurse felt my mom was actively dieing. My sister and I arrived around 9:45 am. The hospice nurse explained the process and that mom could be in this stage for only a few hours or a few days. Everyone was different. We held hands, talked, and prayed with mom. Since I am the planner I knew we had to make some decisions for what to do after. We had talked about options, but I hadn't gotten around to making arrangements. I had to ask the Hospice nurse what happens after my mom dies. She said that since she was on hospice she was already preregistered with medical examiner and that they would sign off on releasing her body to whomever we had chosen to help take care of her final wishes. So Michelle and I left the room and called a wonderful cremation organization. A wonderful gentleman answered my questions and said that he would call me back within an hour to explain next steps once mom did pass away. While Michelle and I were gone my sister had some alone time with mom (which she needed)... and when we came back into the room... my mom looked different her breathing was more labored and I just knew she was getting ready to meet God. We sat next to her and held her hand. Told her it was okay. Than my sister had this great idea. Let's play her song. My mom loved Home Free an acapella group. They did a cover song Wake Me Up. So we played it. At the very end of the song mom took her last breathe. It was amazing to be there with her. I am so thankful I could hold her hand when she went to Heaven.
Another side note: A year prior my sister and my mom talked about final wishes and had written them done. Did she want a funeral, did she want to be cremated, etc. In the notes it stated... Song - Wake Me Up by Home Free - Funeral/Death. So the whole time when we were with mom that Saturday morning... she probably kept saying .... Play my stupid song. I am so thankful she left us these amazing memories. I am thankful that I was there with her during her final moments. I am thankful my sister and I are closer. I am thankful to know my sister and I can handle the most intense experiences together and are a great team. I am thankful that we had our happy ending with our mom.
Mom passed away around 11am. My dad, Ruth, Nate, and Randy all arrived to say goodbye while we waited for the Cremation place to come.
